More Information About BCG Side Effects - February 21, 2009

I try to watch pretty closely what people are searching for when they hit this blog. In the past few weeks the sources have been pretty evenly split between Google, Wellsphere, and BlogCatalog, with a few thrown in from CancerCompass. One thing that most have in common is that you are searching for information on BCG symptoms, side-effects, and dosages. While I am done with BCG until September, I am still experiencing minor side effects from the last series, which "ended" ten days ago. Here is a summary of things that have happened to me:

During treatment: Burning sensation, urgency to urinate, abdominal cramping, backache in the lower right side (below the kidney), soreness and burning in the bladder and urethra, dribbling after urination, and the specific side effects described in my backup page.

Up to 6 - 8 weeks after treatment: Soreness in bladder (increased dramatically after exercise or sitting for long periods), discomfort in urethra, physical exhaustion (especially after trying to carry on work and play as if everything is normal), mid-night insomnia, mid-day drowsiness, elevated blood pressure (may be stress related).

I'm forced to admit that the reason I have not mentioned the post-treatment side effects is that each one is relatively minor, all improve day by day, and I have an instinct to "man up" and ignore them or pretend they don't affect me. My symptoms are pretty consistent with the others I have contact with, and according to my doctor, are more severe than average. They are far from the worst that can happen, and for that mercy I am thankful. For those wondering what it feels like, the photo at right demonstrates Mike Tyson delivering a BCG-loaded punch to Irishman Kevin McBride in 2005. I'm pretty sure McBride can handle BCG now!

David F in England had worse immediate side effects summarized here. And this week I was contacted by Ed B in Washington state. His experience has been different from mine, so he agreed to let me post it for the education of all. He also details some minor prostate and other issues. The story is straightforward, but a couple of the items might disturb more sensitive readers (2/10 on the squeamish scale), so you can read about it on Ed's backup page here.

One thing that surprised me a bit was that Ed's urologist was not familiar with the extended BCG schedule or reduced dosage. He approved it after Ed contacted Dr. Lamm and showed him the supporting data. An article describing the efficacy of reduced-dosage BCG is here:

In case the link changes in the future, I am reprinting the summary below:

One third of the standard dose of bacillus Calmette-Guérin (BCG) could be recommended as adjuvant treatment for intermediate-risk superficial bladder tumors, Spanish researchers say.

In 430 patients with these tumors, the investigators compared three regimens: a low dose of BCG 27 mg (one third of the standard dose), BCG 13.5 mg, and mitomycin C (MMC) 30 mg. Instillations were repeated once a week for six weeks followed by six instillations once every two weeks over a period of 12 weeks.

Patients in the BCG 27 mg group had a significantly longer disease-free survival interval compared with patients in the MMC group. Compared with the BCG 27 mg group, the MMC and BCG 13.5 mg groups were at 86% and 49% higher risk of death after adjusting for potential confounders.

Disease-free survival was not significantly different between the two BCG groups or between the BCG 13.5 mg and MMC groups. The researchers observed no significant differences among the three groups with respect to time to progression and cancer-specific survival time. Local and systemic toxicities were higher in both BCG groups.

The BCG 27 mg dose seems to be the minimum effective dose as adjuvant treatment for intermediate-risk superficial bladder cancer, the authors concluded. BCG 13.5 mg is similar in efficacy to MMC 30 mg but is more toxic.

From the November 2007 Issue of Renal And Urology News

Also I note that Ed and others have BCG instillations done by any available staff member. Inconsistency in their approaches has greatly increased his discomfort. I am even more grateful that Dr. Hopkins chooses to do instillations himself, which is VERY unusual.

Bladder Cancer Staging and Second TURBT

One thing that Dr. Hopkins and the pathology lab did NOT do was sub-stage my T1 diagnosis as either T1-a or T1-b (b is worse). Robert G from New York (another bladder cancer frat buddy) writes that he is hopeful his T1-a staging is more hopeful for recovery. He provides this article as evidence for doing the substaging: http://www.ncbi.nlm.nih.gov/pubmed/17645415. My take is that such procedures cost more, and all they can do is increase or decrease one's hope factor. Robert G also points out that the Memorial Sloan-Kettering practice is to do a second TURBT to verify staging and grading, which is also expensive and minimally increases risk of ancillary damage. I did have a second TURBT due to perforated bladder, but doing so without such cause is not the norm in the rest of the country. And MS-K will do radical surgery at the slightest provocation, yet another way to guarantee high income for the doctors and hospital. Perhaps I am being needlessly critical, but they seem to me to operate with an ongoing conflict of interest. The only other med center that routinely defaults to surgical approaches for bladder cancer is USC. While it may be true that radical surgery has the highest 10 year survival rates across all patients of all ages and conditions, it's a damn high price to pay, and it may not be necessary. I am banking on faith and education to fight the disease, with radical surgery only as a last resort.

20 comments:

I wonder if our "attitude" to toughing through the treatments and just "getting on with it" affects how we see and react the treatment? I know that it works and so the side effects are, in a way, positive things?

Sorry to hear that you too are getting the tiredness that comes with the treatment. It takes a while to get past that. Just when you do, you are back to the next one :-)

As always, thanks for a good factual and interesting post. Have a good weekend.

I just wanted to thank you for your research and sharing your story. I have been looking for information to help my father, who is right now suffering through 12 (!) bcg treatments in NY. He is suffering from many side effects, the worst being Extreme sleeplessness.

My husband was going thru bcg treatment for bladder cancer, by his 4th one he started getting alot of pain thru shoulder area and in his lower back ribs area. Right after 5th one these symptoms became unbearable, in the Er, they could not figure anything out. Went to family pysician a few days ago they put him on prednisone to take out any inflamation in his ribs & back. It is helping quite a bit but still no appetitie and in quite alot of pain. Has anyone else had this? How long can this last? He did not even finish his 6th treatment. Any info will be appreciated.

The only type of back/shoulder pain I am aware of is caused by inflammation of the bladder near one or both of the ureters. This makes it difficult for the kidneys to feed urine to the bladder and aches like holy hell. My doctor said I could take up to 4 ibuprofen immediately after noticing any ache to counteract this effect, and repeat in 4-6 hours if necessary. My pains are not near the level you describe for your husband, so this was more than enough to do the trick for me.

I have been having bcg for C I SI have had my second dose and the burning and pain is so accute when passing urine the pain below my right kidney is so bad do we all suffer these side effects the night seems to be the worst time with pain barry

Just found your blog and am so glad to have some info from other patients. I am a 65 year old woman in otherwise good health.

Short history: May 2008, after experiencing gross hematuria(blood in urine)a urologist discovered a small high grade lesion in my kidney. The kidney, ureter, and bladder cuff around it were removed. I had cystoscopes at 3 month interals and on the third he found 7 small papillary tumors. These were then revoced and found to be low grade. Six weeks later I began BCG therapy (1 a week for 6 weeks, followed by 3 more after 3 months and then 3 more after another 3 months.

After the 4th treatment I experienced severe burning in my bladder (not just upon urination), as well as frequency, etc. Each treatment has been progressively worse pain-wise. I have to take hydrocodone to control the pain and lately hae been switched to percodan during treatments.

Upon cystoscopy after the first 6, he observed a smallish red area, inflamed and looked like spider veins.He said he'd seen this before after BCG. The next cysto revealed 3 of these areas, larger amd redder and mossy looking. He still attributed them to the BCG treatments. A month ago my last cysto showed very inflamed areas areas, the centers of which were deep red and velety in appearance.

This doctor is highly respected in his field in a major city and on the staff of a major teaching hospital. Unfortunately, he doesn't have much of a bedside manner and is dismissive of any questions. After the last 2 visualizations of these lesions he's been concerned that it may be cancer in situ,potentialy much more serious.

Each time the FISH test ($1500 urine test that looks at the DNA to see if there are cancer cells).However, I have had 6 negatie FISH test, and twice I did have cancer (kidney and bladder), so I was becoming progressively more anxious. He was so sure of his opinion that he felt a biopsy was unnecessary.

After this last experience, I insisted the he do one, so today I was put under a general anesthetic and had one performed. I won't know the results until next week, and if it is cancer-in-situ, treatment will depend on the staging.

Your story was ery helpful, as my doctor will gie me almost no info on side effects of BCG. I'm curious if others have had what he refers toas "BCG" patches? The internet desctiptions of in situ are exactly what I've seen and I've not been able to find info regarding such patches as side effects of BCG.

Your blog also explained the back pain I've been experiencing, which I had just attributed to getting older, but it's in the same location as yours and is worse during and after treatments.

A slight burning sensation was all i was told about the BCG treatment.. Thank god i found these blogs which now confirms I'm not going crazy, tiredness, lazy, shortness of breath, and a general feeling of being unwell now makes me feel as if Im doing ok and will hopefully now be able to cope with these "side" effects a lot better.. treatment no:3 of the 6 was my worst, I passed blood and clots for 13 hours straight. unbelievable stinging pain every 5-10 minutes and eventually fell asleep at 3am in a warm bath after anti inflam's and panadol... no:4 and no:5 treatments were best, no stinging and felt good only after 1 day, I have been drinking alot of Cranberry juice with no:4 and 5 which helps enormously and seems to defeat the pain very easily, I mentioned this to my doctor and he wasnt concerned if i continued drinking this..for a moment I thought that the cranberry juice may have been counteracting what the treatment was supposed to be doing it works that well for me.. So i just thought I'd post these things in hope that it can resolve others of some symptoms.. thanks again for the blogs and i wish you all the best. Cheers

I would like to share my story so far. I have had 3 BCG treatments to date. I am a 65 year old male. Early in June (last month) I woke with terrible pain which was later diagnosed as kidney stones. The urologist did a CAT scan and noticed a tumour in my bladder. He then performed a scope and removed both the stones and the tumour. He said I was very lucky to have kidney stones as tumours are never detected this early. The lab test results showed it was not cancerous, but I was at risk of a possible re-occurrence. He recommended a 6 week course of BCG as a preventive measure to eradicate any risk of cancer. So I did my home work on BCG and was really worried. I said good-bye to the family before the first treatment and told the folks in my small business I would be gone for a few days. That was last Thursday. Image everyone’s surprise when I arrived in the office last Friday at 10.00am fit as fiddle. Last week I had my second treatment and expressed concern with the doctor that I was feeling so good. The doctor responded by saying that 95% of the time there are no problems. I had the third treatment 2 days back. This time there was some post treatment blood in the urine that has cleared up. I think the reasons I am not having side effects etc is firstly, the insulation is done by the doctor, a specialist urologist, himself in his rooms, and secondly, the BCG is only in the bladder for 30 minutes. The other reason may well be that this is a treatment for any cancer that may be in its very early stages and there is no major “internal war” in my bladder and body between the bad cells and the BCG. The doctor was warned me that as the future treatments take their course I may experience some side effects. Well let’s wait and see and I will keep posting.

The BCG treatment is over. The last treatment was the worst, my body really did not like a catheter stuck into it every week. I also ended up with an infection – but an antibiotic fixed it. It was nowhere near as bad as I was led to believe it would be. In 6 weeks time I will have another scope to see if the tumor is coming back. The real problem for me is the costs – South African medical insurance stinks.

I finished my 3rd treatment last Friday. Yes, I did lift off the table this time. I'm thinking about going to a hypnotist now. Like John A, my body just doesn't like the catheter.

I subscribe to the belief that you can endure anything once you get your mind right. I'm not there yet with this procedure but I'm working on it.

I know that six months ago I was passing shrapnel every other day. I got very used to blood and pain. I pieced together enough fragments to identify a Google image of a bladder stone that was similar in appearance. It was from a desert tortoise but what the heck it got my doctor's attention. A CT and one sonogram later they removed a 2" blob with crystal body armor.

On this last point, I must pause. There is more veterinary science on bladder stones than there is of the human kind. They don't know a thing about what was growing inside of my bladder. We don't know if my stones were due to the molting of Cepheus (yes, I gave the beast an appropriate name) or my body was secreting a cement to smother the bastard. I'd like to know more on that and I think my doctors should also.

I went through 2 surgeries and I am no longer tortured by stones. On the upside, I can now watch the final moments of Braveheart and not even wince.

Maybe Master Wallace is my key to endure the second half. I need a kilt for this procedure. And I should probably wait to paint my face blue after they put me in the room.

Doctor prescribed BCG once a week for 3 weeks every 6 months for 2 years. Im just finishing my 12th treatment of BCG with no reoccurrence of cancer. Side Effects after each treatment seem to be stronger and longer after each week during the 3 week periods. Body aches, loss of energy, frequency to urinate then barely getting anything out, hard to start urinating, some blood and clots coming out of urination and insomnia, cannot sleep at night.After the treatments are complete all of the symptoms go away after a few days except the insomnia and inability to start urin stream. Nothing more frustrating than standing at a restaurant urinal and not being able to start a urin stream when you know you have to go.

Hello. just found this site & looks very intersting. My hubby,57,is waiting for confirmation of BC - urine test said positive, 1st biopsy said negative. Had CT scan on Tuesday & waiting results. Also biopsy under GA booked for early April. This has all come suddenly & we were planning on doing a trip to Papua New Guinea at end of May. It is voluntary work on a medical ship. We have already booked airfares etc.My question is IF it shows he does have BC & specialist has said the treatment would be BCG, would this affect his immunity to diseases like typhoid, Hep A & B, malaria etc? We are due to get our vaccinations for the trip but this darn BC has come up in the meantime. He would have finished the 6wk session of BCG by the time of our trip, but only just.As much as he`s looking forwaard to the trip, the last thing we want is him getting sick on a ship (at least its a medical one!)miles & miles from anywhere civilised!BTW, we live in New Zealand.

Maree there is no way to contact you except here. My opinion (not as a doctor) is that BCG over time will build the system immunity. During BCG treatments, immunity may be compromised as the body diverts resources to combat the imaginary infection, or it may actually be elevated due to all the activity. I am sure your doc in NZ will be able to advise you about your trip on the medical ship.

Second BCG treatment with no side effects except the ability to sleep 8 hours and take a 2 hour nap 4 hours later.(On the weekend of course) I"m told that by the fourth treatment to expect some effects from the BCG. We"ll see.

My ground Zero cancerous tumor was discovered in November 2011, removed in January 2012 and the first 6 weekly BCG treatments begun shortly thereafter. The next cystoscopic exam found no tumors and the BCG treatments were resumed for three weeks. Beginning with the very first BCG treatment, my bladder, prostate and the rest of the plumbing became so inflamed I was urinating painfully every five minutes and by the second series I had the pain in my lower back as well. That is when I discovered the over the counter drug AZO. Think of it as Tylenol for the bladder. It turns my urine a bright orange but it GREATLY reduces the pain of urination. My next cysto found an “irregular patch” and a subsequent biopsy showed it to be non-cancerous. I am now on a preventative quarter dose for three weeks, followed by another cysto, and without the AZO the pains are just as bad as they were after the first series. So I recommend AZO and Depends to help you get through your treatments. Good Luck!!!!

Thank you for your blog it is so helpful to read about your experiences with the bcg.I just had my 6th one and it was horrendous the pain after had it on Monday now Wednesday and still have cramping and burning .told my husband no more he said ok just give up and die .No doubt when I am feeling better I will forget this painful time. Thank you

Translate

Current Status - November 7, 2016

Need to contact me? Use the photo-link near the bottom of this column.

John B. in Minnesota had an ALL CLEAR cysto on October 21, making it 4.25 years for him! Great news following Scott in the Carolinas on Oct 21.

Still enjoying my working retirement. Business is plodding along - not setting records, but paying the bills. If you are thinking you can retire soon, or in just a few years, I'd encourage you not to wait and go for it. Whether you can afford it or not. Life is short.

My parents were from a generation that feared seat belts. In May of 2013 they were both ejected from their vehicle (my father would have said "thrown clear") and did not survive. People, if you are traveling over 35mph, WEAR YOUR SEAT BELTS!

BLADDER CANCER ROLL CALL

Recent results:John B. in Minnesota ALL CLEAR on Oct 16. - 4.25 yearsScott in South Carolina ALL CLEAR on Oct 21. - 2 yearsSteve S. in Tennessee ALL CLEAR on Oct 4. - 5 yearsJulie T. in Illinois ALL CLEAR (despite tiny red spot) on Sept 27. - 5.5 yrsME! - Steve K. in (various locations) ALL CLEAR on May 10. - 8 yrsDoug B. in Tennessee ALL CLEAR on April 7. - 3 yrsRoy B. in Alabama ALL CLEAR on March 31. - 4+ yrsSebastián in Argentina ALL CLEAR on March 10. - 5 yrsBen F. In Louisiana ALL CLEAR on Feb 23. - 5 yrsDavid F. in England ALL CLEAR in Feb - 10 yrs>HK in Toronto ALL CLEAR on January 19. -5.5 yrsBrian S. in Atlanta ALL CLEAR January 2015. - 3 yrs+Ed B. in Washington ALL CLEAR January 2015. - 6 yrs

Need to contact me? Use the photo-link near the bottom of this column.

Short Summary of My Situation

On March 31, 2008 I was diagnosed with bladder cancer. As a non-smoker, at my age, with no family history of cancer on either side, I was quite surprised. The cancer was T1-G3 and Non-Invasive. It's not immediately life threatening, but my bladder is still at risk. I have been CANCER FREE via surgery for 8 years now, an important number having exceeded two years. In addition I have completed 6 weekly treatments of initial BCG immunotherapy and seven 3-week maintenance rounds with moderately unpleasant side-effects. I have implemented radical dietary changes (no pork, shellfish, sugar or artificial sweeteners, processed flours, or chlorinated water), take several vitamins and supplements including the Budwig Flax Oil Cottage Cheese (FOCC) mix, resumed PectaSol-C MCP,and added regular exercise.

In May of 2017 the doctor will again visually inspect for new cancer growth via cystoscope, with 3 maintenance BCG treatments to follow. While the probability of recurrence is still high, the risk of disease progression is dramatically decreased now. The downside picture is not nearly as dire - making it past 2 years means that recommendation for radical surgery is not automatic, but any new cancer leads to another TURBT surgery to remove and analyze what's there. If it isn't too bad, we continue with BCG maintenance. If the pathology is severe the doctors MAY insist upon radical cystectomy - removing the bladder, prostate and several nearby lymph nodes. Then the surgeon can build me an orthotopic ileal neobladder to preserve most normal functions. Other options are available, and trade-offs can be made between lifestyle and risk.

I passionately desire to avoid all of the downside scenarios, so I am pursuing an analytical approach to Complementary Therapies - those that can be done IN ADDITION TO what the doctors are doing. There are over 200 "unproven" approaches out there, and some work sometimes. I am doing an objective, systems-based analysis of which ones work under which conditions, looking for common, science-based threads. My current set of 10 things I am doing is described in detail in this post. It's very difficult to pick through all the emotional and political BS to find the kernels of truth, if any...

All diagnosis, prognosis, and treatment recommendations have been validated with second opinions from a urologist in Indiana and Dr. Lamm in Arizona.

About Me

I am a great fan of life and doing something useful with the limited time we have on this earth. I enjoy my church, my home life, my retirement, and owning my own consumer products business.
My hobbies include sport-touring on my Honda ST1300 motorcycle, and consuming fine food and wine (both at home and dining out).

Get Blog Updates via E-Mail:

Recommended Reading

My Medical History

On March 31, 2008, I received the very unwelcome news, "You've got bladder cancer!"

I was born in 1959, and I am a white, male, American. I married at age 24, and in October of 2008 we celebrated our 25th anniversary. We have no children, and that's OK with us. I had a vasectomy in 1999, so no changing minds on that decision - and the docs dismissed that early as any type of contributor to the situation.

I am six feet, zero inches, and was 255 pounds when all this started, but weight decreasing now thanks to surgeries and this wake-up call. I am NOT saying cancer comes from being overweight, but weight exacerbates all other problems. (Down to 240 pounds as of 9/1/08, down to 230 pounds as of 12/31/08, down to 220 as of 5/15/09, but back up to 230 and holding since...)

My blood pressure (checked and tracked weekly) runs a hair high - 130/90. Been steady at that level for many years. Been higher lately - stress will do that.

I don't smoke, and never have smoked anything, including marijuana. The docs had some problem believing me, as smoking is a strong indicator for bladder cancer. I tried asking if I should take it up now to break even, and they finally let it go. I find the whole idea of smoking distasteful, having suffered in a home where both parents favored unfiltered Pall Malls. The docs claim that secondhand smoke at home from birth through my high school years would not be a factor.

They also suggest that exposure to radiation and chemicals can cause this. I worked in a chem lab at college and there was stuff around; but my exposure was not that much and I never rubbed my groin on any of it!

I do enjoy an occasional alcoholic drink - usually a couple of glasses of wine with dinner or maybe a beer or two with pizza or during a televised sporting event. My use is less than daily and almost never more than two in any day.

I was diagnosed with gout in 2004. Gout is a crystallization of uric acid in the joints - primarily in the left big toe. These crystals cause irritation and inflammation - then BIG TIME PAIN. Gout supposedly comes from eating rich foods and poor circulation. I may also have a recessive gene for gluten sensitivity which may have contributed; but I have not as yet investigated this. I controlled the gout successfully for a while by super-hydrating (one gallon plus of fluids per day) but 4 international trips proved that I could not maintain or control this outside of home and an air-conditioned office. So in 2006 I began taking 75mg of allopurinol daily. This is also NOT a factor for bladder cancer.